My husband had Covid (omnicron) February 2022 and was admitted with Covid pneumonia and blood clots in both legs despite being on Xarelto for a clotting disorder. He spent 18 days in hospital. He was critical but did not want to go on a ventilator. Was given baricitinib, and it was a miracle--all his inflammation markers dropped to almost normal in 24 hours. He went home on 2 L of oxygen and did well for about 2 weeks (no mention of pulmonary fibrosis in lungs). He then had a flare-up and quickly got worse being unable to get his oxygen sats above 82%. CT scan showed scarring in the bottom third of both lungs and inflammation in the middle third of his lungs. Was in the hospital for 14 days and went home on 6 L of oxygen and Prednisone 40 mg. When Prednisone tapered to 10 mg. had another flare-up and back in the hospital for 10 days. This time he went to inpatient pulmonary rehab for 10 days. It really helped but he needed a longer stay that insurance would not pay for. Was okay for about a month and then another flare-up at the end of May when the Prednisone was tapered. Went to out-patient pulmonary rehab and was okay for 5 months--was started on Cellcept in June to use as a steroid sparing drug and tapered down to 5 mg. with no problems. My husband also has diabetes and the steroids caused his blood sugars to skyrocket. He started to fill bad again the end of October. He woke up every morning with a headache and he started having tremors--oxygen sats were ok on 5-6 L. Went back in hospital November 7 due to CO2 retention--we did not know that could happen. His arterial CO2 was 102--a very critical level. The headaches and tremors were a sign but nobody told us to watch out for that. In hospital a week and could not stand or get out of bed. They discharged him to inpatient rehab. He left on 4L of oxygen. Found out too much oxygen can cause the CO2 retention. My husband has high anxiety and wanted the oxygen turned up with every little movement. After a few days in inpatient rehab his CO2 level was back to normal and he was kept at 3 L even with exercise. His sats stayed 93-95 which turns out to be better than trying to keep it at 96 or above. However, he started slacking on his exercise and ended back in the hospital on Christmas eve with CO2 retention again for five days. In the ER they needed to put him on 12 L. He had an arterial CO2 of 98--again a critically high level. Again he could not stand or walk. Was discharged to inpatient rehab for 12 days and he rapidly improved.

After a year of this, I am convinced that exercise is the key to improvement in quality of life. You must make the maximum usage of the normal lung tissue you have. In the inpatient rehab, he was receiving 3 hours of OT and PT every day. I wish the insurance would see that if could stay at least thirty days in inpatient rehab, they would save on his not having to be hospitalized so often. Just like you, his CT scans and chest x-rays look the same. The fibrosis has not progressed, but the inflammation remains--not sure why that does not clear up and the pulmonologist has no answers.

He is signed up to participate in a clinical trial his pulmonologist suggested for a new anti-fibrotic that starts in July. However. it is for pulmonary fibrosis in general and not specifically related to COVID 19. I am thinking if his fibrosis is not progressing, he does not need to chance being in this trial--we will see how he is doing regarding the fibrosis and if he is the same, may not participate. We are seeing another pulmonologist on February 28 to get another opinion.

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